Dysautonomia Research Fund

I hope everyone has had a wonderful holiday. During this time of giving, we wanted everyone to know about an important non-profit dysautonomia research fund we have founded.

Many of you who have been following my blog know that I have been struggling with a disease that has disabled me and changed my husband's and my lives forever.

To give those who are just joining us on my blog a summary of what we have experienced, here's a quick recap. I have been severely ill for over 4 years. In 2004, I was an active, healthy 26 year-old emergency veterinarian. It all started with a severe cat bite that landed me in the hospital on IV antibiotics for 3 days. I then began experiencing severe dizziness, blurred vision, heart palpitations, fatigue, pain, and fainting. I was unable to drive, walk for more than very short distances, or stand for more than a few minutes without assistance. Even my memory and concentration were affected to the point where a long conversation would force me to rest for several days.

After 1½ yrs of getting progressively worse, we went to the Mayo Clinic in Minnesota where I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, which is the dysfunction of the autonomic nervous system. POTS is a chronic illness that is characterized by the body's inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia, constant lightheadedness, dizziness, weakness and extreme fatigue. I have never been able to go back to work and have been disabled since my illness began.

This disease has no cure and the cause is unknown. Some cases can be triggered by an illness or insult to the immune system, such as the cat bite, but it is not understood how this happens. Even treatments are only able to give some symptomatic relief, but cannot affect the disease itself.

There is very little research being done on these diseases, so Adam and I have decided that it is important to us to start a fund dedicated to increasing research devoted to dysautonomia and POTS.We have chosen to join with the UNC Medical Foundation of North Carolina, Inc. to develop a UNC-based Dysautonomia Research Fund. This fund will give yearly seed grants to early researchers looking into dysautonomia and POTS. I will be on the board that decides who will receive this yearly grant, and will ensure that the money goes to a candidate looking to further research that can assist those of us that suffer from dysautonomia.

This research could make an amazing difference in the lives of all people with dysautonomia and POTS. We feel that this program will be able to do a huge amount of good and hopefully help to fight dysautonomia and POTS. The more money we can raise, the more research we can fund. If we can raise more than $100,000, we can fund research in many institutions throughout the country. So little is known about dysautonomia and POTS, that every dollar that goes to research is essential. We have seen firsthand how life-altering POTS can be, which is why it is vital more research is done.

If you are able to donate to our Fund, please consider giving as much as you can. We know that economic times are tough right now, but our health depends on research. Thanks so much to everyone who considers giving. All donations are fully tax deductible and 100% of proceeds go to UNC research.

Have a wonderful holiday season!

How to Donate:

If you decide to donate, it would be great if you could email me at lmbutare@wheredidigetthislemon.com so that I can make sure UNC designates the money to our fund. :)

• Credit Card: https://www.medicalfoundationofnc.org/donate/online_donation.shtml

NOTE: **Make sure that you choose "Excellence Fund" under the drop-down menu for “Please designate my gift to.” In the “In honor of” field below that menu, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC. The “alumni” the form refers to is UNC Medical School Alumni, not UNC as a whole.

• Check: Make your check payable to “The Medical Foundation of North Carolina, Inc.” and write in the notes section “Excellence Fund, Butare-Smith Campaign.” Then fill out this form and mail it with your check to:

The Medical Foundation of NC
880 Martin Luther King Jr. Blvd.
Chapel Hill, NC 27514

• Bank Drafts: print out the form found here: http://www.medicalfoundationofnc.org/donate/autodraft.shtml and mail it to the address listed on the site. **Make sure that you choose "Excellence Fund-non alumni giving" under the question “Please direct this monthly gift to the following areas in these proportions:” In the “In honor of” field at the bottom of that listing, write in “Butare-Smith campaign.” **(Otherwise the funds may be used for other parts of UNC Hospitals). Also note that you can donate to this fund even if you are an alumni of UNC.
• To pledge to donate: fill out the pledge form and mail it to the address on the form. They will send you an invoice on the date you select. Be sure to follow the instructions above for how to designate your donation.

The Medical Foundation donation site also has a complete description of each way to donate, just make sure to follow our instructions for designating the funds.

Informative POTS video

Here's another great video that shows clearly what I was trying to explain a few weeks ago about the amount of heart rate increase involved in simply standing as a person with POTS. Very well done video. And the part with the dog at the end is one of the sweetest moments ever. :)

The Essential Chronic Christmas List

Wondering what to get your chronically ill friend or relative? Here's a list of items that I have found to be very useful over the years and would recommend to anyone with a chronic condition (especially, but not limited to, dysautonomia and POTS). So this is a list not just for gifts, but for general living everyday, all year. fyi, all the links are not to actual sites or products I have necessarily used, but they are similar to those that I have at home.

SmartWool socks: perfect for the winter for those of us with Raynaud's phenomenon or just cold feet in general. These are the only socks I have found that can keep your feet warm in almost any situation (although I must admit I have never warn them in the Arctic...)

Cute pillboxes: None of us enjoys carrying loads of pills around with us wherever we go, but if it has to be done, it may as well be done with style!

Klean Kanteen Stainless Steel Water Bottles: Since we POTSies must have water with us at ALL times, why not carry a permanent water bottle with you instead of plastic?

Seat cane: I use one from Magellan's that is super lightweight and indispensable for me. A must for any time you are going to the grocery store or shopping or even going on a short walk outside so that you have an instant seat when your heart rate gets too high.

Extended Height Rolling Stool: I use mine every day in the kitchen. You really need to measure your countertops to make sure that you get one that rises high enough to be useful (mine is 30"). I use it anytime I am in the kitchen chopping, mixing or washing vegetables, and if I need to go to a different part of the kitchen, I can simply roll over there rather than walking.

Shower chair: not the most glamorous of items, but an absolute must for POTSies who have a risk of fainting and getting extremely dizzy in the shower.

Arthritis Gloves by Imak: Nice for when the joints in your fingers feel swollen and on fire. These are the best ones that I have tried.

Paisley Cotton Bandanas: I have to use these all the time to manage my temperature fluctuations associated with my ANS dysregulation. These help to cool you down fast and get your hair off of your neck when you are having a crazy hot flash for no reason. Really any scarf will do, these are just examples.

Personal fan: Great to carry in your purse in the summer so that any hot flashes can be stopped in their tracks. Or, keep on on your side table during the summer...there are actually some nice looking ones out there now from Vornado.

Support hose: can be helpful with blood pooling in the legs associated with POTS

Neck pillow: Very useful for the car or airplane to keep yourself more relaxed and less likely to have muscle spasms.

Knee braces: If you have hypermobile joints, knee braces can be essential for days when your knees are really acting up. Wrist and elbow braces can also be helpful.

Blood Pressure Monitor: This one is fairly accurate, syncs up to your computer, and is actually nice looking so you can keep it out.

Journal/ sketchbook: a nice journal (for the writing inclined) or sketchbook (for the artistic types) can be a great outlet for anyone with a chronic disease.

crocs Mammoth Clog:these are great to keep your toes nice and warm during the holidays. Super comfy.

Tinted glasses/ pale sunglasses: Very useful for photophobia associated with dysautonomia; it can be very helpful when in a store with fluorescent lights.

Medical books: Books about the conditions that we have can be really helpful in fine tuning our treatments, or even to find new ways of coping with our diseases. See the list on the lower right of my blog to see some of the books that I find helpful.

This is just a partial list of things that people disabled with chronic illnesses might enjoy receiving. Other great gifts include driving them to appointments, making meals for them, helping to run errands, etc. Anything thoughtful that you do will be very much appreciated by them.

I'm sure that I'll think of more things that would be useful for chronically ill people. I'll add more items in later posts as I think of them. Have a wonderful holiday season and I wish you all good health in the year to come!!

Happy Thanksgiving

Happy Thanksgiving! I hope that everyone has a wonderful time this Thanksgiving holiday, with good food and good company. Try not to make yourselves too sick by overeating, and I promise to try the same!

Here's a good tidbit for those of you who do overindulge this holiday: try ginger as a therapy for nausea, sour stomach and gas problems. Traditional Medicinals has a great ginger tea (great as in great for a natural therapy, not great tasting) that can work wonders. Ginger Chews are also useful, and are much more palatable (don't work quite as well though). If you don't have access to these brands or just need a homemade option, here is a recipe that you can try to make your own ginger tea at home. Hope you don't need to use it, but it helps if you do! Have a great holiday everyone!

Ginger Tea
5 cups water
1 piece (6 inches) ginger, sliced into 1/4 inch slices
1 Tablespoon honey

Simmer water and ginger for 10-15 minutes, until desired strength (you may want it less strong to start with). Remove from heat and stir in honey. Feel free to add more honey to taste. If you make a stronger version, you can keep it on hand in the fridge and add hot water to it directly to make a tea when you need it.

What's Next?

I've been trying to figure out what topic to talk about next (since their are tons), hence my fun delay tactic for Halloween. ;)


I've decided that Treatments are probably some of the most important things to go over here, but it is certainly not going to be a short series of posts; so, I think I'm going to go over treatments but intersperse the posts with product reviews of useful items to get if you have a chronic illness or possible gifts to give sick friends. I may also have to do a Thanksgiving post of some sort b/c my husband Adam is insisting on seeing a "turkey lemon" of some sort created... I suppose I have to do as he asks every once in a while!

So look for posts on Treatments and Assistive devices over the next few months. Don't worry, it won't get too boring b/c I don't want to bore myself either. And if I'm having a tough couple of weeks, I may put "placeholder" posts about my dogs or something like that...

Stay tuned!

Are POTSies vampires?

I decided to dress up the lemon as a vampire for Halloween because most of us POTSies are very pale and often anemic! The pallor is a common symptom associated directly with POTS, most likely due to the decreased blood flow that makes it to the head and brain. The anemia is more of a anecdotal feature that many of us have, but has not been explored and may not be directly related to POTS. I am one of the ones that has both of these, although I am slightly less pale than I was a few years ago, most likely due to some of the medications I am on to increase my blood pressure. I do tend to be more awake at night too...hmm, does this mean that I could be a vampire and not just a POTSie? Something to look into...

So have fun this Halloween. Eat a few pieces of candy, watch a scary movie (if your heart can take it POTSies), and try not to scare all of the Trick-or-treaters with your pale faces! ;)

A day in the life of a POTSie...

Over the past few months, I've spent the majority of time on this blog writing about chronic illness in general... But today, I thought I should go back to talking about my specifics, i.e. POTS (postural tachycardia syndrome). For those of you who have not been with us from the beginning, I have POTS, which is a dysfunction of my autonomic nervous system. Basically, my autonomic nervous system does not respond appropriately to most tasks asked of it; for example, when I stand, my heart rate skyrockets and will keep rising the longer I am upright. I am on multiple medications that are designed to help with this problem, like a beta blocker to reduce my heart rate, and midodrine, which raises my blood pressure in general so that theoretically my heart rate will not need to rise as much to compensate for my standing. There are a lot of other problems associated with dysautonomia, such as being unable to regulate my body temperature (if I have a cold drink, I am freezing and have to put on a blanket even if it's 80 degrees in the house), difficulty digesting many foods, blurred vision due to increased pupil size (among other issues), fatigue, fainting, etc. Not a fun disorder to have to say the least!

One of the most difficult problems, of course, is the lack of control I have over my heart rate. I thought a lot of you would find it interesting to see exactly what kind of heart rate changes I am talking about. Below I have a graph that shows my heart rate while wearing a continuous heart rate monitor during the day (I chose an hour to show the changes in bpm enlarged). A normal person's heart rate would barely fluctuate at all and would stay relatively consistent. The low points are when I am lying down, trying to recover from standing, and the high points (upwards of 120 bpm) are when I am standing or walking in the house. This graph is only while I am in the house on a normal day...no extraordinary activities here at all (unless you consider doing a load of laundry extraordinary). You can see that the instant I stand, my HR skyrockets and stays up until I sit or lie down. When my heart rate gets very high, I get extremely dizzy, disoriented, and feel faint. If I stayed standing long enough (more than a few minutes), I most likely would faint, as I have in the past.

Keep in mind, this graph is while I was on a beta-blocker (obviously it wasn't working as well as it should have been), so it would be even worse on no meds. Needless to say, not the easiest problem to have and the polar opposite to being able to function normally...

Undiagnosed Diseases: NIH

As many of you know, I went for years without a diagnosis for my debilitating illness despite visiting as many doctors as I could find (over 30 in fact!). I was very excited to find that the NIH has finally set up a program for patients languishing under the "undiagnosed" category. This program should be a huge help to many people and, hopefully, keep others from going as long as many of us do without a diagnosis. I have posted a copy of the information about the Undiagnosed Diseases Program below. If anyone knows someone or has a loved one with an undiagnosed disease, please share this program with them to see if they might be able to qualify. In some cases, the NIH will actually cover all the costs of travel to and testing at the NIH!! Very exciting news indeed.

"Undiagnosed Diseases Program

Some patients wait years for a definitive diagnosis. Using a unique combination of scientific and medical expertise and resources at the National Institutes of Health (NIH), the Undiagnosed Diseases Program pursues two goals:

• To provide answers to patients with mysterious conditions that have long eluded diagnosis
• To advance medical knowledge about rare and common diseases

The program is trans-NIH in scope. It is organized by the National Human Genome Research Institute (NHGRI), the NIH Office of Rare Diseases (ORD) and the NIH Clinical Center. Many medical specialties from other NIH research centers and institutes will contribute expertise needed to conduct the program, including endocrinology, immunology, oncology, dermatology, dentistry, cardiology, and genetics, which are represented among the dozens of participating senior attending physicians who may participate in the program's clinical research.

Any longstanding medical condition that eludes diagnosis by a referring physician can be considered undiagnosed and may be of interest to this clinical research program. Of the total number of cases that may be referred to this program, a very limited number will be invited to proceed in the study at the discretion of the program’s medical team.

For more information please call (866) 444-8806

Please do not send Undiagnosed Diseases Program-related email or submit medical records to the NIH Office of Rare Diseases. All communication should be handled through the Undiagnosed Diseases Program staff at the NIH Clinical Center."

NIH-NORD Undiagnosed Diseases Program

National Invisible Chronic Illness Awareness Week

Okay, so all of you know that I recently did a "mini-series" of sorts on Invisible Illness. Interestingly enough, this week is National Invisible Chronic Illness Awareness Week (Sept 8-14) at www.invisibleillness.com. They are sponsoring 20 free online seminars on Chronic Illness, featuring guest bloggers daily, and have articles to read, among other things. The theme is "Living with chronic illness is a roller coaster. Help a friend hold on!"

As you'll see to the right, there is a new widget that I have added to support this week. As it says, Nearly 1 in 2 Americans has a chronic condition, and 96% of them live with an illness that is invisible. Now, of course, not all illnesses are disabling, but all people need love and support when going through a tough time. Paul J. Donoghue and Mary Siegel, co-sponsors of the week and authors of Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness say, "Invisible chronic illnesses (ICI) have symptoms that are difficult to see and impossible to measure such as pain and fatigue. So those with ICI frequently encounter not compassion and support but impatience and skepticism from physicians and loved ones."

If you know someone who suffers from or has a loved one who suffers from a chronic illness, be sure to check out the website and pass on the word.

Life Is Fine

This is the best poem ever. Truly inspirational to anyone facing a difficult time in their life.

Life Is Fine

I went down to the river,
I set down on the bank.
I tried to think but couldn't,
So I jumped in and sank.

I came up once and hollered!
I came up twice and cried!
If that water hadn't a-been so cold
I might've sunk and died.

But it was Cold in that water! It was cold!

I took the elevator
Sixteen floors above the ground.
I thought about my baby
And thought I would jump down.

I stood there and I hollered!
I stood there and I cried!
If it hadn't a-been so high
I might've jumped and died.

But it was High up there! It was high!

So since I'm still here livin',
I guess I will live on.
I could've died for love--
But for livin' I was born

Though you may hear me holler,
And you may see me cry--
I'll be dogged, sweet baby,
If you gonna see me die.

Life is fine! Fine as wine! Life is fine!

Langston Hughes

· Invisible Illness Part 3: The Push-Crash Cycle

From CFIDS Suggestions for Friends (cfids.org):

Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive and distant, especially during relapses, as spending time with people requires energy. Since energy is in short supply, your contact may be less frequent than in the past.

* Recognize that although the person may seem "normal" when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later.

You can pretty much guarantee that anytime you see a friend that has some type of severe or debilitating chronic illness, they look better than they feel. For some reason, unknown even to ourselves, we always brighten up & act healthy as can be when were around friends, family, even doctors. So if a person w/an “invisible illness” LOOKS sick, you know they’re in really bad shape. Most of us wish that there were a way to convey how bad or ill we feel, but in many cases we’re just so happy & amped up to be around other people that we seem almost healthy. The real problem w/ this cycle is that it often gives people a false idea of how severe our sickness is: “Well, she was sitting up & talking to me, so she must be doing really well” or “she came out to dinner with us, so she must be all better”, or “I saw him at the store the other day, so I don’t see why he can’t work” or “ if she can do___, then why can’t she___ (drive, work, babysit, etc)”. I am TERRIBLE about acting nice & healthy at the doc or around friends but then being unable to get out of bed for days as a result of my excursion. In many cases, we actually have to concentrate so hard to keep from seeming sick that we push ourselves farther into illness.

It’s a strange paradox: we want people to know we’re sick, but we often don’t want the public stigma that goes along with it so we go out of our way to act as healthy as possible. In a way, people with chronic illness are “masters of disguise”: disguising their illness, disguising their fatigue, disguising their pain. I know countless examples of people who should be using a cane or a wheelchair in public places (including myself), but refuse to do so out of embarrassment & to avoid the stares of strangers wondering “What’s wrong with her?”. Many of us find ourselves avoiding going to stores or on public outings b/c we don’t want to be seen in a wheelchair. Or we feel self conscious using our handicapped sticker b/c we look young and healthy but can walk less distance than an 80 year old. It’s a terrible shame and ridiculous in a lot of ways, and it’s something we have to fight against every day. As a person who was always in control of myself & my own destiny before my illness, it’s agonizing to have to be pushed around the grocery store in a wheelchair. I know I often push myself WAY beyond my limits (and then pay for it later) just to avoid feeling weak & dependent on someone else. It’s an endless struggle.

What is also important, however, is to hold on to a certain amount of your own stubbornness and independence. You must spend most of your time working within your limits, but cannot allow yourself to atrophy & give in to sickness & despair. lf you do not know how far you can go (and have a drive to constantly work to increase that amount) then you will have a much more difficult time improving & dealing w/ your health problems over time. For example, I am now doing Physical Therapy once a week to build up the muscles around my joints because I keep dislocating them. It is thoroughly unpleasant, and makes me feel worse in general, but it is a necessary evil and may eventually increase the amount of activity that I can do.

One more interesting description of how difficult it can be to manage the small amount of energy you have throughout the day is called The Spoon Theory by Christine Miserandino. The theory explains how a person with a serious illness must have extremely good "energy management" skills that allow them to make it through each day. I recommend anyone that knows someone who has a serious illness check it out to get a bird's eye view of how difficult it can be to do even the most basic of tasks when disabled.

I hope that everyone has found my little Invisible Illness series interesting and useful. I have lots of ideas for future posts, so you'll just have to wait and see what comes next! :)

Intermission

Just writing a quick note before the final Invisible Illness entry in my "miniseries" to let you know that I added a list of some of my favorite books on Chronic Illness that links to Amazon. I have a short blurb written by each one to give you an idea of what I think about the books. It's on the lower right hand column for anyone who is interested. As I read more of them, I'll add them to the list.

Also, I plan to add some slightly more upbeat topics in the coming weeks so that it doesn't feel so serious around here all of the time! Hope you'll hang around with me as I bungle around with blogging.

Invisible Illness Part 2: What NOT To Say

A woman that I met through the Dysautonomia Information Network (dinet) has a great explanation of things that can be difficult for people with severe chronic illnesses to hear. I received this list from Melissa Mambort, aka Sunfish, who also has autonomic dysfunction (severe progressive autonomic neuropathy). She has a great website on which she shares many of her struggles and ideas at http://www.freewebs.com/sunfishoutofwater/adayinthelife.htm.

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A few things NOT to say/ask (pretty please?)

I realize that 99.9% of the time the things I'm going to list are NOT said with any malintent. People may simply be trying to make conversation in a difficult situation.

I am posting this to let people in to a bit of my world. To raise a bit of awareness and educate people about how certain things that may seem benign can actually sound on the receiving end.

Here goes:

1. "Are you feeling better?" When asked generally, this question is particularly tough for me. Because my reality is that I don't even know what it means to feel "better." If asked in the context of something specific, i.e. a recent hospital stay, a particularly bad day, a certain situation, etc. that's entirely different and fairly easily answered, but often it's asked in a general sense because people want to hear me say "yes." I would LOVE to say "yes" and have that be the truth. But that's not the truth and after years of decline and it's not likely to be anytime soon, if at all. If I were better I wouldn't have had to stop working, stop even part-time school, move in with my parents, etc. You get the idea. But trust me...if "better" enters into the picture, I will be shouting it from the rooftops.

2. "Stay positive/ hopeful, things will get better..." Most people who know me well tend to say I'm a pretty positive and hopeful person. I'm also stubborn & determined & have thrown in some denial over the years to keep going at times when my body has vehemently protested. I will never give up hope of improvement(s) - however small or large - whether via medical treatment or a miracle. I wholeheartedly believe that anything is possible. But my current reality is that there aren't any promising treatments on the horizon for my overall health. And to be truthful thinking on a daily basis that things will get better when it is very possible that they won't is more difficult than trying to move forward as best as possible within the actual limitations of my body.

3. "I know exactly how you feel (regarding fatigue, nausea, moving home, etc.)" Whether in the context of chronic illness or anything else this is dangerous territory. There are many realms wherein I would have no place saying this to another. And, however well intentioned, it's a hard thing to hear when one knows full well that it's not true. The few people who really can say this to me in my life because they have in fact been where I am in some way are precious, but the reality is - thankfully - that most people haven't been. Because being fatigued, even if from illness that is more short-term, isn't the same as being fatigued all the time. Having a stomach bug that limits food for a few days isn't the same as not being able to eat at all for months on end. And moving in with parents for various other reasons isn't the same as moving in because of not physically being able to live alone any longer. So while empathy can be a great thing, the good intention can end up hurting more than helping when the comparison isn't really comparable.

4. "It must be great to not have any schedule/ commitments" It IS great when normally one's schedule is packed and it's for a weekend or even a few weeks. But it is NOT great when it's because it is physically impossible to keep a schedule or honor commitments. I would love to be able to know that I can do anything at all in a given day much less schedule anything and feel confident that I would be able to be there.

5. "I wish I could sleep/ rest that much" Much along the same lines as the above sentiment, it's a situation of something being a choice or a luxury rather than it being a mandate. Excessive rest and/or sleep isn't enjoyable when the body refuses to do anything else.

6. "Are you glad to be home?"/ "It must be great to be back home" This issue is a double-edged sword. As I wrote a bit about in the update about the move (10/30/06), it's in truth very difficult. I am very thankful to have a place to come home to. It is a safer place to be in the midst of ever-evolving medical sagas. And since we've known the move had to happen it's good to have it behind us rather than looming ahead. But that doesn't make it great or something that I can get excited about. I'm almost 27 and had lived on my own for over nine years. I never could have imagined moving back in with my parents. Coming home to visit is one thing but moving in indefinitely because I physically can no longer live alone is entirely different and more than a little difficult.

7. "You don't look sick" To be honest I'm thrilled that I don't look as bad as I often feel. There are times when I don't look well at all but most of the time - if I'm sitting or lying down & you can't see my IV lines - I don't look sick. But hearing "you don't look sick" can feel like doubt or disbelief when the reality is that no matter how good I look, I am.

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The comments from Melissa's list that have been most difficult for me are #3, 4, and 5. I had a few people saying that it must be nice to have a “vacation” and sleep and rest. One said that now I could be a "Lady of Leisure". Another friend had someone say it must be nice to stay home and “eat bonbons all day”. Wow. Is it nice to be able to sleep when you have the flu? No. Is it nice to not be able to stand or walk or drive? NO. Is it nice to be forced to stay home when the only thing you want to do is work? NO. So of course it isn’t nice, it’s terrible. Thankfully, most people weren’t that insensitive and realized how difficult it must be to be that sick.

So, does this mean that we don’t ever want to talk about our illness or how we’re feeling? Not at all. It is a huge portion of our lives that cannot be ignored. It is fine to ask how we have been feeling or how our doctor’s appointments are going or what we’re up to during the day. In fact, we appreciate that. What we don’t like is people acting like if we have a day where we are not close to comatose then we are all better, or thinking that they understand how we feel. No one who hasn’t had their life completely taken away by illness can understand what we are going through. BUT, don’t be discouraged or scared about what you say every time you are near a sick person. If you truly care about and love that person, they will understand what you are trying to say. Just try to apply a version of the golden rule: If I were in that person’s shoes, what would I want to (or not to) hear?

Invisible Illness Part 1: You look good…you must be better, right?

Uh…no. This is a common problem with many people facing chronic illnesses: the so-called “invisible illnesses” that ravage our insides, but may cause only minimal visible damage outside. I know in my case, when I look the healthiest (nice rosy cheeks, good color), it actually means that I am not doing so well and my temperature regulation is on the fritz and I better sit or lay down fast before I fall over.

Invisible illnesses are many these days and can include anything from severe arthritis to fibromyalgia and chronic fatigue to lupus. In some ways, these illnesses are all the worse for the fact that people can’t tell that you are sick by looking at you and therefore may make judgments about how much you should be doing, even if you cannot.

One of the most difficult things that chronically ill people have to deal with is actually the way they are treated by others rather than their daily symptoms. Although ultimately it is the illness that is causing the destruction in their lives, it can be devastating to hear callous or insensitive remarks from people who are often well-meaning but speak before they think. Sometimes even things that sound completely innocuous can be painful for us to hear, even though they might not seem like it.

Some examples of helpful and hurtful remarks are given by the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America at cfids.org:

CFIDS Family & Friends:

Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust. Examples:

What do you expect me to do about it?

You'll just have to live with it.

If you just _________, you'll get better.

Pull yourself up by your bootstraps.

You can beat this thing if you really want to.

I have a lot of the same symptoms as you do.

Healthy people do experience some CFIDS symptoms from time to time, although not as frequently or severely as PWCs [people with chronic illness]. Statements such as, "I get tired, too," and "You're not the only one who's forgetful" may cause persons with CFIDS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively.

Examples of helpful responses are:

I'm sorry you're feeling so badly.

I wish I could make it better for you.

I know this is difficult for you.

You're handling this illness so well, but I know it really gets you down sometimes.

What can I do to help?

Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at "fixing." Often he or she just wants you to listen.

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The next installment of the invisible illness series will talk about what not to say to a person with chronic illness.